Entries in Chronic Pain
(10)

Coral Von Zumwalt(NEW YORK) -- In many respects, Cynthia Toussaint is unlucky. She was a ballerina who had a role in the show Fame. Then she was brought down by a then-nameless chronic pain disorder that left her mute and in a wheelchair for years.

But in one respect, she is lucky. She is one of the few women she knows whose partner, John Garrett, didn't leave her during years in pain. He stayed with her during the 13 years doctors told her the pain was in her head, and the 17 more as she gradually found her voice and started lending it to other women with conditions like complex regional pain syndrome (CRPS) and fibromyalgia.

"He said he never doubted me, but he did not understand it," Toussaint said.

She said Garrett has taken care of her and their home since they were 21 or 22 years old. Now, they're 52.

"To not leave is amazing," she said.

Garrett said he met Toussaint in 1982 when they were 19-year-olds at the University of California, Irvine and planned to move to Los Angeles to pursue careers in entertainment. Then Toussaint suffered a ballet injury that went from "bad to worse to catastrophic."

The pain from the injury to her right leg spread through her entire body, which is typical of CRPS, though she did not know it at the time. CRPS has no known cause, but doctors suspect it is either a damaged nervous system response or an immune system response. The young couple wouldn't get a diagnosis until 1995.

And for years, he tried and failed to sleep in bed next to Toussaint at night as she writhed in pain.

"There's no manual, no textbook on how to take on something like this early in your life," he said, noting that most people who care for elderly parents are middle-aged. "I had fantasies of fleeing, of getting the hell out of here. I'd get in a Honda Civic and head out on the I-15 and just keep going."

Garrett worked odd hours to bring in money and still be around to take care of her. His acting career would have to wait.

Toussaint compared caring for women in pain to caring for an Alzheimer's patient: "We don't get better, and we don't die. It's just the truth."

But Garrett stayed because he loved her, and what he really wanted was to make her feel better. He made her meals, helped her dress and even helped her go to the bathroom when things were at their worst.

Toussaint's CRPS diagnosis was the real turning point, he said. And when they founded For Grace, a nonprofit to educate and help women in chronic pain, he became its executive director.

They're about to have their fifth annual Women in Pain conference on Friday, and they have a bill on California Gov. Jerry Brown's desk to ensure effective pain treatment for patients.

There are pitfalls of being a caregiver, but he has stayed with Toussaint for more than three decades. They'll celebrate their 32nd anniversary on Sept. 15.

"Sometimes, you lose yourself. You lose your identity, giving yourself over to caregiving for somebody," he said, adding that it's important for him to reconnect with his desires and goals when he can. "If you truly love someone, you'll go through hell and high water to help them in any way you can."

iStockphoto/Thinkstock(NEW YORK) -- Acupuncture may truly hold benefits for those suffering from certain forms of chronic pain, a new review of research suggests.

In a review of 29 previous well-designed studies, which together looked at almost 18,000 patients, researchers at Memorial Sloan-Kettering Cancer Center found that acupuncture does, indeed, work for treating four chronic pain conditions: back and neck pain, osteoarthritis, chronic headache and shoulder pain.

Even "placebo" acupuncture, where the practitioner only pretends to place the needle or places the needle in a random site, is effective at relieving pain, though true acupuncture works better.

The review was published Monday in the Archives of Internal Medicine.

In the analysis, the researchers determined that 50 percent of true acupuncture patients experienced pain relief -- in other words, pain levels that were cut in half. Only 42 percent of sham acupuncture patients and 30 percent of patients who had no acupuncture at all experienced similar pain relief.

The researchers said it is better and more precise than previous reviews because of the high quality standard that was required by the study authors.

"In general, we were interested in acupuncture because clearly it's very controversial," said Dr. Andrew Vickers, the primary author of the study. "It comes from and involves ideas that aren't found in conventional books of anatomy and physiology."

Complementary and alternative medicine, including acupuncture, has long been a controversial topic in medicine. About three million Americans undergo acupuncture, mostly for chronic pain. Even so, given the lack of good evidence, many patients are not referred for acupuncture.

"There is now a solid evidence base for referring patients for acupuncture," Vickers added.

Critics maintain, however, that the clinical relevance of this study is unclear and that most of acupuncture may very well be just a "placebo" effect.

They also note that acupuncture can be very painful and can have serious risks, such as infection or puncturing a lung -- though these occur rarely.

"The problem with acupuncture is that it doesn't last very long; it's like taking a pill," said Dr. Joshua Prager, a board-certified pain specialist at UCLA. "I do see it as something worth trying, but it only works in a small percentage of my patients."

Jupiterimages/Thinkstock(BETHESDA, Md.) -- Mark Burleson awoke to unimaginable pain a month after the bomb he had been disarming detonated in his hands.

"My injuries were extensive, to say the least," said the 31-year-old Marine staff sergeant, who had severe burns, shattered bones and a brain injury from the December 2011 blast in Afghanistan's Helmand province.

Burleson's right arm was gone below the elbow; his left arm spared but paralyzed.

"All the nerves were ripped from my spinal cord at the root," he said, describing the damage that drove waves of pain down the otherwise senseless and limp limb. "It felt like someone was lighting my arm on fire with a cutting torch. And, occasionally, they'd stop and tie anchors to the ends of my fingers to rip out the bones."

Powerful drugs were no match for Burleson's constant agony. And despite coming home from a war zone, the married father of three felt world's away.

"It was to the point where the kids would just walk past him because they know he couldn't bear to interact with them," said Burleson's wife, Sara. "He became like a ghost."

Willing to try anything for relief, Burleson was quick to sign up for risky surgery to slice open his spine and singe the offending nerves.

"The pain was ripping our lives apart," the Camp Lejeune, N.C.-based Marine said. "This was our last-ditch effort at having a normal life."

On July 26, Burleson left Walter Reed Army Medical Center in Bethesda, Md., for Johns Hopkins Hospital in Baltimore, where neurosurgeon Dr. Allan Belzberg agreed to try the high-stakes, high-risk surgery.

"It's a dangerous operation, so we only use it when we've exhausted all other options," said Belzberg, who performs the procedure three or four times a year.

Using a microscope and a tiny electrode, Belzberg made 140 burns in the damaged nerves dangling from Burleson's spinal cord; nerves intermixed with healthy connections to his lower limbs.

"If you get it just right, you get rid of the pain," Belzberg said of the stressful six-hour procedure. "If you're the slightest bit off, you paralyze his leg."

But the surgery went smoothly. And one week later, Burleson is a new man, although he expects to be at Walter Reed for at least a year.

"It was like instant clarity," Burleson said.

Sara Burleson, who spoke to her husband by phone before he returned to Walter Reed on Tuesday, said, "I could tell even before I saw him that it had worked. His voice sounded lighter. Even though he was groggy from the surgery, this huge weight had been lifted."

Researchers from the University of California, San Francisco coaxed mouse embryonic stem cells into becoming mature nerve cells that could bridge gaps in the circuitry that triggers neuropathic pain.

“One of the major causes of neuropathic pain is the loss of inhibitory control at the level of the spinal cord because of nerve loss or dysfunction,” said study author Allan Basbaum, chairman of UCSF’s department of anatomy. “The idea was to replace or repopulate the spinal cord cells that provide that inhibition.”

The same stem cells, “destined to become inhibitory neurons” that dampen the signals that cause pain, were previously shown to improve symptoms in a mouse model of epilepsy, Basbaum said. “The question was whether we could take the exact same cells and put them in the spinal cord.”

Before injecting the cells into the spinal cords of mice with neuropathic pain, the researchers labeled them with a fluorescent tracer to track the connections they made.

“We were able to show how these cells integrate beautifully,” Basbaum said, describing the way the transplanted cells looked and behaved like the mouse’s own.

Not only did the cells set up shop in the spinal cord, sending and receiving signals through a complex network of neurons, they also eased the neuropathic pain.

“In four weeks, the animal’s condition completely disappeared,” Basbaum said, adding that transplanted “control” cells that lacked the inhibitory properties of the stem-cell-derived neurons failed to ease the pain.

“The clinical significance is that we think we’re actually modifying the disease, not just treating the symptoms,” Basbaum said, adding that drugs currently used to ease neuropathic pain fail to treat the underlying problem. “Instead of taking a drug to suppress the pain, we’re trying to normalize the circuit that was damaged by the disease or the injury. The cells repopulate, they integrate, and basically they treat the disease.”

The findings, while preliminary, give hope to 100 million Americans who suffer from chronic pain, according to a 2011 report from the Institute of Medicine.

But before the technique can be tested in humans, the researchers have to see if human embryonic stem cells have the same ability to ease pain without causing side effects in mice.

“Will they take? Will they integrate? Will they treat the condition?” Basbaum said. “If they do, we could start asking whether they could treat neuropathic pain in humans.”

Keith Brofsky/Photodisc/Thinkstock(WASHINGTON) -- Women make up the vast majority of the nation's 116 million chronic pain sufferers, yet doctors frequently dismiss their complaints as all in their heads, sending them on years-long searches for relief, a patient told senators Tuesday.

Although studies have observed women's chronic pain is more frequent, more severe and longer lasting than men's, many women still are told "their problem isn't real. Your pain doesn't exist, you must be imagining this," Christin Veasley testified.

In her case, she said, back and neck pain from an old car accident became "an unwanted companion for 21 years." Since 2008, migraine headaches, facial pain and jaw pain piled on more misery, she said.

"From the moment I open my eyes each morning, the first thing I feel is pain," said Veasley, executive director of the non-profit National Vulvodynia Association, which aims to help the one in four American women and "countless adolescents" suffering invisible but excruciating genital pain at some point during their lives.

Veasley, who has recovered from vulvodynia she had in her 20s, testified on behalf of the Chronic Pain Research Alliance. She said she hopes Congress will lead the way in enacting "long overdue change to help us regain our quality of life and ability to contribute to society."

She was among five witnesses appearing at a Capitol Hill hearing on "Pain in America: Exploring Challenges to Relief," called by Sen. Tom Harkin, D-Iowa, chairman of the Senate Committee on Health, Education, Labor and Pensions.

The hearing followed publication last year of an Institute of Medicine report that included recommendations for improving diagnosis, treatment and research into chronic pain, as well as boosting health professionals' recognition of both the problem and its toll.

The cost of chronic pain exceeds $600 billion each year -- more than cancer, heart disease and diabetes combined, the IOM report found. Chronic pain is defined as pain that lasts several months or more, according to testimony from Dr. Lawrence A. Tabak, principal deputy director of the National Institutes of Health. It may crop up as persistent pain after an injury heals, or arise as a debilitating symptom of long-term diseases like arthritis, diabetes or cancer.

Often, Tabak said, people suffer from chronic pain associated with more invisible conditions like fibromyalgia, irritable bowel syndrome, chronic headaches or jaw pain -- all more common in women than men.

"The majority of my patients are women," said Dr. Timothy A. Collins, a neurologist with the Duke Pain and Palliative Care Clinic in Durham, N.C., who was not involved in the hearing.

He said migraine headache is "three times as common in women compared to men." Fibromyalgia "appears more common in women than men," and "a number of pain conditions are directly caused by abuse (sexual and physical) and unfortunately, women are more commonly on the abused side of the equation."

Collins said U.S. culture encourages women "to voice feelings, emotions and physical complaints" while generally discouraging such complaints in men.

"This tends to affect the perception of the care provider -- if there are significant emotional issues, the other complaints may become attributed to the emotional complaints," he said.

In other words, if a woman with chronic pain also suffers from depression, a doctor may attribute all of her complaints "to being depressed, so no further evaluation or treatment is needed," Collins said.

Women with chronic pain also are subject to some of the same gender discrimination that contributes to their under-treatment for cardiac disease and or arthritis. For example, a 1999 study published in the New England Journal of Medicine found that white women (and black men) were 40 percent less likely to be referred for potentially life-saving cardiac surgery.

A 2008 study published by the Canadian Medical Association found doctors were more likely to recommend knee replacement surgery to male patients with knee arthritis than to female patients, suggesting that gender discrimination might contribute to women being three times less likely to undergo knee replacement than men.

In addition, when it comes to doctors' decisions about managing pain, a February 2003 study of doctors' pain management knowledge and attitudes, published in The Journal of Pain, found that women were less likely than men to receive "optimal treatment" for post-surgical or cancer-related pain. That study also found doctors set lesser goals for chronic pain relief than for acute pain and cancer pain.

Creatas/Thinkstock(NEW YORK) -- A new study finds that yoga can be beneficial in improving symptoms of chronic back pain patients.

Researchers split up 230 adults with chronic back pain into three groups: one group took 12 weekly yoga classes, another group took stretching exercise classes, and the last group was given a self-care book. After conducting telephone interviews, the researchers found that the yoga group reported better functional status than the self-care book group.

There was no difference in functional status between the yoga group and stretching exercise group.

The research backs what is already known – that physical activity and exercise is beneficial in chronic back pain patients.

The research was to be published in the Archives of Internal Medicine.

Creatas Images/Thinkstock(WASHINGTON) -- ABC News’ senior health and medical editor Dr. Richard Besser – a former director of the U.S. Centers for Disease Control and Prevention – offers these tips for tackling your problems with pain:

If you are currently managing your pain by yourself, you need to get help from an expert. There are pain specialists to help you understand your pain triggers and find the best medications. You should look for the most relief with the fewest side effects and should always work with your doctor. Don't add medications on your own. That is when you can really get into trouble.

Make sure you have a doctor who you feel believes you. Nothing is worse than being in pain and feeling like your doctor doesn't understand your problem. If you are in that situation, it is time to get a new doctor. There is no quick fix for most conditions that cause chronic pain. You have to believe that your doctor is on your side.

Educate yourself. There are a number of drug and non-drug therapies (physical therapy, yoga, meditation, massage) that can help control pain. Be open to trying new approaches. Dealing with the stress that comes with having a chronic pain condition can actually help reduce the pain itself.

Courtesy of Kathy Buckley(NEW YORK) -- Kathy Buckley is a successful comedian who has guest starred on television shows like Good Morning America and Touched by an Angel, but her life wasn't all that funny.

The stand-up comic has been hearing impaired since childhood. Her academic performance was so poor that in the second grade she was placed in a school for the mentally impaired.

"Talk about being slow," she quipped about her teachers.

At the age of 20, Buckley was run over by a Jeep while sunbathing on the beach and experienced years of chronic pain and intermittent paralysis in her legs. Then she was hit with cervical cancer -- twice.

Today, at 58, she has overcome years of chronic pain, mostly by changing the way she looks at it psychologically.

Buckley will be bringing her award-winning good humor to the fourth annual Women in Pain Conference, "Reframe Your Pain, Reclaim Your Life," on Sept. 16 in Los Angeles. The conference will examine the psychology of pain and using pain as a positive experience to give women the tools to "reclaim their lives."

"I will go in and make them laugh," said Buckley. "Do some stand up, based on truth from my life experience and then share some stories."

"I find that when people find pain in their lives, it becomes something bigger than it needs to be," she said. "Pain is something you have to find a way to live with and then move on."

The conference is sponsored by For Grace, an organization that seeks to increase awareness of the gender disparity women experience in the treatment of their pain.

It was founded in 2002 by Cynthia Toussaint, who suffered for 25 years with chronic regional pain syndrome and chronic fatigue.

The conference will introduce women to nonconventional therapies to take control of their pain: mindful meditation and guided imagery, diet, exercise, yoga, and even social media networking.

An estimated 80 million Americans suffer from chronic pain, according to the American Chronic Pain Association. Research also shows that women are hit more often and with greater intensity.

Thomas Northcut/Thinkstock(NEW YORK) -- A series of studies published in Lancet may provide proof that patients in pain may not be receive proper care for managing their aches and discomfort.

It is estimated that up to 75 percent of surgical patients in the U.S. may not receive adequate post-operative pain relief. Research also shows that acute postoperative pain can become chronic in as many as 30-50 percent of patients who undergo procedures such as mastectomies, hernia repairs and coronary artery bypass procedures. But improvements have been made over the past decade in providing pain relief, mostly through regional pain relief such as epidural analgesia or peripheral nerve catheters. Study authors from Johns Hopkins University School of Medicine write that the use of multiple pain medications or techniques at once “may lead to substantial gains in the treatment of acute post-operative pain and potential reduction in the development of persistent pain states.”

The cost of chronic non-cancer pain, typically defined as pain lasting longer than three months or beyond the expected period of healing, is estimated to be over $210 billion per year here in the U.S. The authors in a University of Washington study review some of the most commonly used interventions to treat chronic pain such as nerve blocks, surgeries, implantable drug-delivery systems, physical rehabilitation, psychological treatments, and even complementary and alternative treatments. They find that “the best evidence for pain reduction averages roughly 30 percent in about half of treated patients.” As with acute pain, these authors stress the need to research the effectiveness of combination treatments as “none of the most commonly prescribed treatment regimens are, by themselves, sufficient to eliminate pain and to have a major effect on physical and emotional function in most patients with chronic pain.”

Among patients with solid tumors, an estimated 15-75 percent experience significant chronic pain, but research suggests that an average of 43 percent of cancer patients receive inappropriate care for their pain. The authors of a review from Beth Israel Medical Center in New York discuss the best ways of managing cancer-related pain, arguing that only addressing the physical symptoms is not sufficient. Rather, a more individually tailored, holistic approach is necessary in order to reduce pain and improve the patients’ quality of life. Although the term “palliative care” may be associated with end-of-life care, these researchers argue that such an approach to pain management should be initiated from the time of diagnosis and be applied “throughout the course of the illness…[including] interventions that are intended to maintain quality of life, mitigate suffering and improve coping and adaption by reducing the burden of illness and supporting communication, autonomy, and choice.”

Keith Brofsky/Photodisc/Thinkstock(NEW YORK) -- An increasing number of patients are being required to sign pain agreements, and doctors who use them say the documents are an effective way to communicate what the expectations are for the treatment of chronic pain using opioids, and how patients can use these medications safely.

But critics of the agreements, sometimes called contracts, say they undermine the patient-provider relationship.

Pain agreements vary from provider to provider, but in general, they outline conditions patients must meet to continue treatment for chronic pain.

"For example, the agreement may say patients have to keep the medication out of of other people's reach, the medication has to be kept in a locked container, there are no early refills, no sharing of medication, they may be required to submit to random tests to determine whether there's compliance and so forth," said Dr. Melvin Gitlin, chairman of the Department of Anesthesiology, Perioperative and Pain Management Medicine at the University of Miami's Miller School of Medicine.

In addition to random testing, doctors may require patients to have their pills counted to make sure they're the only ones taking them, or require them to use only one pharmacy.

The American Academy of Pain Medicine, the American Pain Society and the Federation of State Medical Boards all recommend the use of opioid agreements in certain circumstances. They started recommending the use of agreements in the late 1990s, according to Gitlin.

But the Center for Practical Bioethics, a Kansas City, Missouri, nonprofit policy institute, believes these agreements can create an adversarial relationships between patients and providers.

Last November, a panel of pain and policy experts, including some from the Center for Practical Bioethics, published an in-depth discussion of pain contracts.

One criticism was that the contracts put chronic sufferers, often in a weakened and vulnerable state, at the mercy of providers, shifting the balance in the patient-provider relationship. Another concern is that the language could offend patients.﻿